Anna Collins1, Nicole Hennessy-Anderson2, Sarah Hosking3, Jenny Hynson4, Cheryl Remedios5, Kristina Thomas2,6. 1. Centre for Palliative Care, St Vincent's Hospital Melbourne, Fitzroy, VIC, Australia Anna.collins@svha.org.au. 2. Centre for Palliative Care, St Vincent's Hospital Melbourne, Fitzroy, VIC, Australia. 3. Very Special Kids, Malvern, VIC, Australia. 4. Paediatric Palliative Care Program, The Royal Children's Hospital Melbourne, Parkville, VIC, Australia. 5. Mercy Palliative Care, Sunshine, VIC, Australia. 6. Palliative Care Research Network Victoria, Fitzroy, VIC, Australia.
Abstract
BACKGROUND: Experiential studies in paediatric palliative care are needed to enable an ongoing international agenda which supports the development of responsive family supports. AIM: To provide an in-depth exploration of the prevalent lived experiences of parents who are currently providing care for a child with a life-limiting condition in Australia. DESIGN: Cross-sectional, prospective, qualitative study guided by an advisory group and reported according to the consolidated criteria for reporting qualitative studies. Transcripts were subjected to a thematic analysis, underpinned by an interpretative phenomenological framework. SETTING/PARTICIPANTS: Purposively sampled parents (n = 14) recruited from a statewide paediatric hospice who self-identified as a 'primary caregiver' for one or more children and/or adolescents (⩽18 years) with a life-limiting condition. RESULTS: Four key themes represented the prevalent experiences of parents: (1) trapped inside the house, (2) the protector, (3) living with the shadow and (4) travelling a different pathway. They describe parents' physical and social isolation, exclusion from the workforce, pervasive grief and associated impacts to their health and well-being. Limited professional and diminished social supports resulted in full ownership of care responsibility. Yet, parents embraced their role as 'protector', reporting acquired meaning and purpose. CONCLUSION: This study builds upon the growing body of evidence available in paediatric palliative care internationally. The key themes highlight the substantial demand for both physical and emotional support beyond what is currently offered and call for the implementation of carefully planned support services and other societal initiatives which seek to alleviate the broad health impacts to caregivers.
BACKGROUND: Experiential studies in paediatric palliative care are needed to enable an ongoing international agenda which supports the development of responsive family supports. AIM: To provide an in-depth exploration of the prevalent lived experiences of parents who are currently providing care for a child with a life-limiting condition in Australia. DESIGN: Cross-sectional, prospective, qualitative study guided by an advisory group and reported according to the consolidated criteria for reporting qualitative studies. Transcripts were subjected to a thematic analysis, underpinned by an interpretative phenomenological framework. SETTING/PARTICIPANTS: Purposively sampled parents (n = 14) recruited from a statewide paediatric hospice who self-identified as a 'primary caregiver' for one or more children and/or adolescents (⩽18 years) with a life-limiting condition. RESULTS: Four key themes represented the prevalent experiences of parents: (1) trapped inside the house, (2) the protector, (3) living with the shadow and (4) travelling a different pathway. They describe parents' physical and social isolation, exclusion from the workforce, pervasive grief and associated impacts to their health and well-being. Limited professional and diminished social supports resulted in full ownership of care responsibility. Yet, parents embraced their role as 'protector', reporting acquired meaning and purpose. CONCLUSION: This study builds upon the growing body of evidence available in paediatric palliative care internationally. The key themes highlight the substantial demand for both physical and emotional support beyond what is currently offered and call for the implementation of carefully planned support services and other societal initiatives which seek to alleviate the broad health impacts to caregivers.
Authors: Maureen E Lyon; Jessica D Thompkins; Karen Fratantoni; Jamie L Fraser; Sandra E Schellinger; Linda Briggs; Sarah Friebert; Samar Aoun; Yao Iris Cheng; Jichuan Wang Journal: BMJ Support Palliat Care Date: 2019-07-25 Impact factor: 4.633
Authors: Lisa M Verberne; Marijke C Kars; Antoinette Y N Schouten-van Meeteren; Diederik K Bosman; Derk A Colenbrander; Martha A Grootenhuis; Johannes J M van Delden Journal: Eur J Pediatr Date: 2017-01-11 Impact factor: 3.183
Authors: Sarah Mitchell; Karina Bennett; Andrew Morris; Anne-Marie Slowther; Jane Coad; Jeremy Dale Journal: Palliat Med Date: 2019-08-21 Impact factor: 4.762